My Mom has been diagnosed with Stage 3 breast cancer. She is 70 years old and has diabetes (around 110 fasting) and hypertension (140/70). She takes Glycomet GP-1 for diabetes and olvance H20 for Blood pressure. She had swelling in her right arm apparently due to the tumor compressing the veins. we would not have known about cancer if not for the swelling in the right arm. Doctor initially said my Mom needs to undergo neoadjuvant Chemotherapy to shrink the tumor before surgery. She is currently undergoing chemotherapy and has completed 3rd cycle of FAC regimen 2 days back. Doctor has suggested to do a 2D Echo after 3 weeks from 3rd Cycle, but there is no recommendation to do CT scan of something else to check the chemo response. She is not having much side effects at all. The Swelling has reduced a bit, but has not gone away completely. I am very worried if she is getting the right treatment. The PET CT scan says supraclavicular node positive with SUV of 10 and dimension of 19mm x 20mm. I am very worried about involvement of Supraclavicular Lymph Node. When I run my fingers over it, it moves a lot actually. Is there a chance of this being benign? I have read that cancer tumors are normally irregular, hard and immovable. Please let me know.
Here are the details of tests
1. lump in axillary tail 49mm X 36 mm SUV 14
2. Supraclavicular lymph node 19 X 20mm SUV 10
No other metabolic activity anywhere else. Nothing in Skin, breastbone or chest wall.
3. grade 1 invasive ductal carcinoma
4. ER +ve 80%, PR +ve 20% HER2 -ve
5. Ki-67 - 20%
6. Nothing reported in Chest Xray, Ultrasound of pelvis and Abdomen, liver
Please help me with some information on this.
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Meghanat
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There are times when chemo response is very obvious by examination and in such cases, a PET may not be needed to assess response. And in some cases, we need it. Whether to do a PET or not, to assess chemo response, is a very individualized decision. It will vary from patient to patient and from doctor to doctor as well. We can not recommend here what to do next, or what is the status presently because the whole decision rests on clinical examination - what it was before starting chemo and what it is now. And also it depends on various other factors which is not feasible to describe here, as discussion is too long.
So my suggestion is, you must sit with your Oncologist and try to understand from him / her, how is the response to chemo, whether need for PET to assess post treatment response is there or not, what is happening to the Supra clavicular Node, etc.
A few reports can not dictate any treatment plan. It needs detailed assessment of the status of cancer, of general fitness of patient and so many other factors, to plan out; hence, opinion on reports shared here or email or WhatsApp is not possible at all.
Don’t worry, make a list of questions, request some time from your Oncologist and talk in detail. If not fully satisfied, you can always consider another opinion. And if you wish some online opinion sites from India, Tata Memorial Centre has one which is very good. You can try asking there.
Does involvement of supraclavicular node worsens the prognosis? Does grade and ER/PR/HER2 result also matter? One of the website says If ER/PR is +ve and HER2 is -ve and if it is Grade 1, it is stage 3A.
When I run my fingers on it, it moves a lot. Also it's dimension is 19mm X 20mm which is not irregular. I have read the malignant tumors are normally hard, irregular and immovable. Could this be a false positive? Please let me know. How can we know conclusively, now that she has already completed 3 cycles of neoadjuvant Chemotherapy.
Even if this is positive, what are the chance that this could be removed surgically?
Is there any benefit of doing CT scan now to check the chemo response?
Also if we had an option of double mastectomy, what was the need of Neoadjuvant chemotherapy?
Also is there any benefit of doing Sentinel node biopsy at the time surgery since neoadjuvant chemotherapy has been done. There is a chance that the cancer would have got cleared from the nodes.
Also ,i have read that Grade 1 does not respond that well to chemotherapy. Is that true? Please let me know
Overall, my mom has been very active, she is not showing any fatigue or any illness whatsoever. I am very scared and anxious because of this breast cancer diagnosis. I am just not able to think of anything else now.
Apologies for several questions and Thanks a lot for your help
Your Oncologist would be appropriate to help you with all above queries. Each one of them will have an answer requiring 5 to 7 minutes to explain. And explanation to every single question will invite another 5 questions of doubt from your side. This is always a two way discussion. It takes about 30 to 45 minutes on intense discussion for me with my patients and relatives on all that you have asked. That’s why it is not feasible to discuss here. This forum can never replace your doctor. We encourage you to discuss all this with your doctor first.
I can very well understand your apprehension and anxiety. I would have felt same if I were in your place. Don’t worry. Again I repeat same, what you actually need is time from your Oncologist. Request him to sit and answer all your queries. You have all the right to ask each and every question. And just follow what your Oncologist says. Things will soon be fine.
Have a note pad or something and write down every question as they come to you. A day or two before your mother's appointment take some time to organize them - the imaging or scans that are most helpful, questions specifically about the nodes, whether additional chemo is recommended, is surgery being considered, and if so what surgery - sentinel nodes, nodes you can feel or more, etc. Give a copy to the doctor so he/she can see what your thinking is and can add in anything you might have missed, and leave space for your notes on your copy. Also record the appointment if allowed. It is helpful to be able to listen to what was said more than once. Let us know how your mother is doing.
Thank you! I was just hoping if you can tell me the prognosis or chances of having my mom cured of cancer based on the information that I have given. I know no one can be sure of having cancer cured, but was just looking for some solace. PET scan does not show any metastasis to any organs or bones. There is nothing on skin, chest wall, she never had any discharges, she had none of the typical cancer symptoms and she has tolerated chemos well up until now. Before the treatment started, couple of doctors I consulted told it has spread locally and with proper treatment she will be fine. Then internet screwed up my mind completely particularly the supraclavicular node involvement. Can you please help me to know how nasty it is based on info that I have provided? Thank you so very much.
To help you with prognosis and chance of cure, here is our suggestion:
1. Ask your Oncologist, what EXACT stage this is, based on his clinical examination and based on reports he has seen. To help you understand the stage, you can read the following article. It is beautifully explained for even a lay man. And for your knowledge, the stages can be 1A, 1B, 2A, 2B, 3A, 3B, 3C or 4. Her stage has to be one of them. It will be a clinical staging.
1. We cannot help you stage because it needs clinical examination, in addition to PET and other reports. Hence, you will need to ask your Oncologist about the stage, especially since you mention that there is some uptake in the nodes above collar bone (Supra clavicular Node). Ask him the exact stage, not random numbers.
2. Whatever stage wise survival is there, should not be given much importance, as things vary from patient to patient and on many factors, some of which are apparent on clinical examination. Two patients of same stage and same age may still have different outcomes depending on how their disease presented.
I do not like to quote statistics but have given link above since you insist on knowing it.
Also, I personally feel that discussing in detail with your oncologist will help you. Seeing the so many very valid questions you have asked above (all my patients ask it and you have asked very important questions telling me you are well read on it)it is clear that maybe your oncologist has still not had a detailed counseling session with you or maybe you have not asked him adequately. For me and my patients, these counseling sessions last for 30 to 45 minutes, sometimes more. And sometimes, more than a few sessions. Like Pat has mentioned above, please note down all questions you have in mind and ask them.
And finally, please understand. Cancer is a very very delicate situation. I would love to help and guide here where I can. That’s the whole reason we are running this ONLY existing Indian forum for Breast cancer patients and care givers. But Answers relating to cure or survival cannot be given online by reading some few lines from a report. It is not all that easy, else one would easily have some software doing it. Why even need a doc? Most importantly, a cancer patient is a special patient. Each one of them needs adequate time from a doctor to understand and plan the treatment and a detailed assessment and staging to predict possible outcomes.
As for Supra clavicular Node, in many of my own patients, I have seen very good responses to chemo. All I can tell you is, keep up the hope. We can definitely expect good responses. Let her Oncologist assess her regularly.
Please stay away from Dr. Google. As you said, it will only confuse you, often with incorrect or dated information. breastcancer.org which Dr. Shah mentioned above, is the only really good resource I found, but while the information is good it does not replace a doctor who knows the exact presentation and test results. I found it useful for making myself familiar with the terminology, so that I could better understand conversations with my doctor.
When I was diagnosed with leukemia, everything I found on Google said that I'd be dead in five years. That was 16 1/2 years ago and my condition is stable. When I was diagnosed with breast cancer a few years later, I found a breast specialist and a breast surgeon who I trusted. I am now 11 years past that. Work with your mother's doctor, and if you aren't getting answers, get a second opinion from someone who will thoroughly discuss her case with you.
I met the doctor today. He hardly spoke to me for 5 minutes. His attitude left very little to be desired. He said one thing which is bothering me a lot. He says since there is lymphedema in right arm, it is considered stage 4. He says the life can be prolonged by 3 to 5 years at best. I have gone through several websites. None of the website associate lymphedema with stage 4. How can he say it is stage 4 and how can he says the life expectancy is just 3 to 5 years. PET CT Scan does not say anything about any organs affected nor the bones. Can someone please help me if the prognosis is that bad as the doctor is suggesting? I asked for CT Scan to check chemo response. He said it is not required. Clinical examination is enough. How can he remember what it was before and in comparison, what is it now. My anxiety increased multifold.
Go for a second opinion. Trust in doctor is very important for the treatment. For me talking freely to my onco was a very important part of my treatment.
Yes, absolutely get a second opinion. My first hematologist was useless. The one I moved on to was wonderful. When I needed a 5 minute check, I got 5 minutes. When I heeded an hour to talk through things, I got an hour. I ope your mother can find a doctor who will explain things thoroughly!
Can you please tell me if it can be stage 4? The first PET CT scan, ultrasound, chest x Ray done 2 months back, none of them indicated any suspicion of metastasis to bones or any other organs. Can it be stage 4 just because there is lymphedema?
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